Palliative care clinicians, a psychologist, social worker, chaplain and/or spiritual leader can provide a space for talking through issues and concerns. A child-life specialist can provide support to your entire family. Your child’s primary physician can also be a good resource, as they may already know your family well and can see the big picture of your family’s experience.
Anticipatory Grief
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Grief is an emotional, cognitive, physical and spiritual response to loss. We tend to associate grief with what we experience after a loss has occurred, but concerns about loss begin as soon as we recognize that a loss may occur. Having a child diagnosed with SNI means a series of losses to anticipate. Many families find it helpful to name these feelings. They also find it comforting to learn that these feelings are normal, and part of a process with its own name: anticipatory grief.
Understanding Anticipatory Grief
Beginning at diagnosis, parents (or other primary caregivers) will experience a range of emotions that may include fear, anger, sadness, irritability, loneliness, guilt and anxiety. These are all aspects of anticipatory grief. Anticipatory grief means grappling with and grieving the losses of what has been expected, long before the future–whatever that will be–unfolds. It imagines all the losses along the way. This grief can take up a lot of room in minds and hearts.
Anticipatory grief can take many forms. It may trigger a desire to talk or to withdraw. It may manifest itself as physical problems such as sleep or memory difficulty, headache or other physical pain. It may include a mental rehearsal of your child’s death and the hours and days following the death. It may include a need to engage in immediate decision-making around preparation for end of life. It could also take the form of avoidance of the challenges that lie ahead.
Coping with Anticipatory Grief
Your experience of anticipatory grief may shift and show up in different ways at different points in your journey. Grief is often non-linear. There is no set path, or right or wrong way to grieve. While it is important to understand that experiencing anticipatory grief is common and natural for parents of seriously ill children, it is also important to understand that your experience of it will be personal. This means that others around you will grieve in their own ways, too. Your support system will help you explore your own process and find ways to best build your strengths and resilience.
Seeking support when you are experiencing anticipatory grief—at your child’s diagnosis, at a change in baseline, when uncertainty is heightened—may help you build coping strategies. By taking care of yourself physically and emotionally, you will be better able to care for your child and family.
Parents assume that their child will live a long, healthy life. With the diagnosis you may grieve the loss of that dream, both for your child and for yourself as a parent. You may also grieve the many things you expected to do with your child (first days of school, graduations, wedding) that now you may not get to do, or that may look very different than you imagined. You may also have had an image in your mind of who you would be as a parent, and the reality is now different. Any change in your child’s baseline can bring with it a renewed sense of loss and grief. As your child begins to miss milestones and lose previously gained skills, anticipatory grief can heighten. It may be especially helpful to seek outside support to process your feelings about these shifts.
